Wednesday, April 19, 2017

/ together we can do it / I'm gonna love you through it.

I apologize to my little neglected blog! I would like to blame lack of inspiration and drive to write, but in all reality it's just pure laziness. My last post was in February and since then a lot has changed. First and foremost, I turned 28! Woohoo! My biggest fear at the time was being 27. I'm sure most of you have heard of the 27 club, Jimi Hendrix, Janis Joplin and Jim Morrison all died at the age of 27 along with Kurt Cobain and countless other celebrities. (it's actually really interesting, if you haven't, you should look into it) I remember the day I turned 27 I kept telling Josh that I didn't want to do it, he of course said I had no choice. It was an irrational fear but in my mind I knew something terrible would happen on year 27. I had a friend who passed away when he was 27. Josh was diagnosed when he was 27. The entire year I was scared and I honestly saw my doctor more times last year than I have in years past. But now that I am 28 I realized that it was stupid to put so much emphasis on a number. It's clear in this world that it doesn't matter your age, things will happen without any reason. Years pass and things just happen, that is life. So we celebrated my birthday in a low key fashion. Josh and I received a year pass to the zoo from my parents for our anniversary so we spent the day walking around the zoo and then met up with my family for dinner. It was a perfect day.

A lot of you have seen us checking in to the VA hospital. When we first moved here we were waiting...and waiting...and waiting for his DD 214. (we surprisingly STILL don't have it!) We were under the assumption that we couldn't go to the VA without it so we delayed treatment by almost two months waiting for this piece of paper. In the middle of March I got so fed up waiting for this paper to arrive (still hasn't) that I had Josh just call the VA and see if we can get in. Low and behold, we could! They don't need the DD 214 to do treatment! March 22 we had our first appointment with the VA. He met with his primary care doctor and she was able to refer us to an oncologist and a neurologist. We were spoiled in Maryland because Josh's oncologist was also a neurologist. It is VERY hard to find an oncologist that specializes in neurology and the other way around. It's a rare field but his doctor in Maryland had referred us to a doctor in Orlando that is in fact one of these rare doctors. While meeting with his primary doctor, we told her about the doctor in Orlando and she said she would see what she could do. A week later, we had an appointment with an oncologist in Orlando, who works with the VA, not the doctor we wanted. I told Josh to just give this doctor a shot, if he hated them we would go private and use Tricare (ps. I love that he can do that. If he doesn't like the doctor the VA gives, he has tricare that can pick a doctor for him. It's great having options!) We went to the VA in Orlando and met with his oncologist, who we fell in love with, and who we found out works with the rare doctor! She did a year of residency under him and she is in constant contact with him. She assured us if there is anything she doesn't know about she will consult him, which gave us a sigh of relief. So for now, Josh is being treated by the oncology department in Orlando VA. Viera VA is his home VA so he goes there for everything else he needs (blood work, MRI, and primary care) It was REALLY hard leaving his team in Maryland. We loved all of his doctors and I never thought I would find that comfort level again. I know it's the early stages of everything, but I love his oncology team here too. Surprisingly it's an entire team of women, which is ironic because his last team in Maryland, aside from his nurse practitioner, was an entire team of men.

So whats new with the cancer? Nothing crazy. Josh has been experiencing "mini" seizures at night. They often come around 10-1030 pm but they are not consistent by any means. Sometimes he will go a week or two without nothing and then they will randomly start happening. I say "mini" because these are the shortest seizures I have ever seen. If you remember a couple years back when he was first diagnosed, he was having what I call "face drooping" seizures. These ones would make the left side of his face droop and he would "check out" for at least 4-5 minutes and then he would have to reboot his brain and come back to reality. The doctor described those like restarting a computer, so you can imagine how they look. These most recent ones though are like a power bump. Like I said, they keep happening at night (go figure, lol) and they are so short. He will make a noise (it's a very distinctive noise, so I have grown to know that noise and know that it means a seizure) and then he will start repeating over and over "I'm okay, I'm okay." I don't know if it's a mantra to keep himself calm or to keep me calm, but surprisingly it works. I usually have time to wake up, go across the room and turn on the light before the seizure is gone and he is in the "coming back" phase. It's odd as hell but I thank the lord it's not full blown seizures, those things are scary and I hate them. Because of the seizures though is why we started pushing treatment. The seizures could be caused by a numerous amount of things; stress, new growth, he could have developed a tolerance to Keppra, and the list goes on. I'm no doctor, but I have been around this long enough to know that's it's something dealing with medication or a new growth. He is capped out on dosage for Keppra so they added a new anti-seizure medication. So far since starting he's only had two mini seizures. His doctor in Maryland said the moment he starts showing neurological signs, we will start chemotherapy. So, that is where we are now.

He started chemotherapy on April 7th. This chemotherapy is different than the previous one he took in 2015. This chemo has three different treatments to it, where as last time it was all the same drug. The cycle won't be the same date every time because his blood work effects it all but here is a base line of how things work.
  • April 7th he took Lomustine. He took all of the pills at once and was "done" until Friday. 
  • Friday the 14th he received Vincristine in IV form. It's a plant based chemotherapy so we had a lot of laughs about that. It's a 10 minute infusion which he did great on.
  • Friday the 14th he also started Procarbazine. If you remember in one of post I wrote about a strict diet? Well this is the pill that requires it. He is on that until April 28th.
  • On May 5th he goes back in to get Vincristine again. (and I think, I could be wrong, but I think that ends out the first cycle)

So far he has taken the pills like a champ. The Lomustine was easy peasy as he only had to take it once and was able to eat whatever he wanted. The Vincristine was easy as well, he just didn't like the fact that they had to put the IV in his forearm (a port might come later on down the line, he is torn on having one but I think it will help a lot). The procarbazine is the pain in the ass. It is considered an MAOI (monoamine oxidase inhibitor) which breaks down the excess tyramine in the body. Tyramine is an amino acid that helps regulate your blood pressure, it's found naturally in your body as well as the food you eat. So we (which includes Josh, me, and my mom at dinner time lol) are on a low tyramine diet. I was terrified of this diet and I remember when we first were told about it I wanted nothing to do with it. It scared the crap out of me knowing that if he ate one wrong thing his body would experience extreme side effects of high blood pressure. I did a ton of research, talked to his doctors, and called in a dietitian to help us. Josh and I knew a guy in Maryland that had done the same chemo regiment and he ate nothing but cereal for two whole weeks. Knowing my husband and his love of food, I knew that wasn't going to work. Through almost two weeks of research I have developed a diet plan for him.

The diet itself isn't really that hard, it's basically a low sodium diet mixed in with the foods you should absolutely avoid, which are fermented, cured, and processed foods. A lot of it is random things he can't eat, like sauerkraut and soy based products. It also is based on how the food is prepared, he has to stay away from buffet type restaurants (which we are staying away from all restaurants in general) and he has to eat the meat within 2 days of buying it. He has to eat only fresh foods and has to stay away from bruised fruits and vegetables. So far, he's doing really well. He had to give up soy milk (which I am sure he is okay with, lol) and went back to 1% and he has given up all other cheese except provolone which he is allowed to have because it's pasteurized. The biggest disappointment is no chocolate! But, he's found out he likes sherbert, he can have popcorn, and he is eating kiwi's like crazy. So far (not really related to the diet, more like from the start of chemo) he has lost 4lbs. I'm interested to see how much we lose considering we are only eating at home (our bank account LOVES that!) and we are rarely eating any processed foods. As far as side effects, he hasn't really had any. He takes anti-nausea 30 mins prior to any chemotherapy and it's doing it's job. He has minor fatigue but nothing like he had with last chemotherapy. He does have a wheel chair and he is required to wear a mask when he is out in public. He spends a majority of his time at home in "isolation" and only goes out when he has to in order to keep himself from getting sick. The new Mass Effect game is keeping him entertained as well as Lego, puzzles, Netflix and movies.

I will try to update this more as I really do love writing it. It's nice to have an outlet as well as really show people the reality of our situation. Most people often forget he still has cancer. We don't look for sympathy and I hate pity parties, but I love updating and letting people know about whats going on. Josh and I are doing great and he will continue to kick ass!

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